The steroids are now kicking in full time. I am constantly hungry. Even when I am full and cannot fit anything more in my stomach I want to shove more in. I am basically now living in the kitchen. The pimples are starting to regrow and also a little fuzzy beard. Oh well I get to gain weight but loose it in hospital. Sucks to be me.
All this food is making me fart like crazy. The problem is that I cannot smell whether it smells. I have to drop it somewhere 'quiet' :) .
The additional anti seizure drugs are making me feel lethargic. Don't know why they recommend it, it should only be used when a seizure has occurred.
Saturday, October 31, 2009
a bit of luck
Today I am going to the supermarket (which is 600m from home) to look for shark cartilage. This is what someone was supplementing themselves to aid in their cancer treatment. My brother in law also had this with the intention of giving it to me but left it overseas.
So I go and look around, nothing. The directory also showed no signs of a health shop. What a disappointment. It was too late to go to the city. Bummer. I was hoping to get something so that at least I have time to try anything before the last scan on the 10th before the operation on the 11th. On the way back I was looking for a chemist but what do you know an undocumented health store. Cool.
While looking through the seeds I found apricot seeds. $3.95 for 0.5kg. WTF. So I bought a kilo. Unbelievable. What's the chances of that. So I leave with 2 bags of seeds and shark cartilage, and my wife added some stuff for her as well. Everything on the credit card. Man my debts are ballooning!
$8 for a kilo of seeds, whereas I had placed an order online for $35 for a kilo of apricot (kernels). I hope I didn't get scammed. We will see. At least I have some seeds in the mean time and can get more close to home.
Whatever happens of the cancer is reduced before the last scan I will be ecstatic. It would be a miracle else I will be a leper.
So I go and look around, nothing. The directory also showed no signs of a health shop. What a disappointment. It was too late to go to the city. Bummer. I was hoping to get something so that at least I have time to try anything before the last scan on the 10th before the operation on the 11th. On the way back I was looking for a chemist but what do you know an undocumented health store. Cool.
While looking through the seeds I found apricot seeds. $3.95 for 0.5kg. WTF. So I bought a kilo. Unbelievable. What's the chances of that. So I leave with 2 bags of seeds and shark cartilage, and my wife added some stuff for her as well. Everything on the credit card. Man my debts are ballooning!
$8 for a kilo of seeds, whereas I had placed an order online for $35 for a kilo of apricot (kernels). I hope I didn't get scammed. We will see. At least I have some seeds in the mean time and can get more close to home.
Whatever happens of the cancer is reduced before the last scan I will be ecstatic. It would be a miracle else I will be a leper.
Friday, October 30, 2009
tumors are not cute
as a colleague recently noted, my tumor is not cute anymore. It's an evil creature eating me alive!
Thursday, October 29, 2009
an eye for an eye
Today I get my eye checked. Dr Gajdatsy, how's that for name. Tall bugger too.
So I see him and he says basically the right eye will be sacrificed, gone in layman's terms. The socket will be reamed till uninfected bone is reached. There is also a side effect of this cleaning. The facial nerve goes through the top and bottom of the eye socket meaning the right side of my forehead and right side of my face will be numb. No feeling. I wont even feel the right side of my lip. Can you imagine drinking but not feeling the cup on your lip. The mouth may also be affected, possibly the tongue and taste.
He said he will be the one removing the eye.
Along the way he adds the pain in the eye drops. And checks my eyes. Then another doctors check my eyes as well for other things. It was uncomfortable but better to do it.
Later I ask what will happen to the eye. He said it's infected so it cannot be reused, rather it will become someone's lab specimen. The eye may have a muscle flap which will create a flat eye surface depending on what the plastic team chooses.
I will also need to do a peripheral perception test. Basically to see if I have any blackspots in my vision.
I also had a number of calls from the doctor to make appointments. One was to see professor Knuckey to discuss the additional growth in my thyroid, another was to do an ultrasound biopsy, and the other was the peripheral test. I also have to remind myself to see a GP to check my phenytoin levels. Don't really like this drug makes me weak and drowsy.
So I see him and he says basically the right eye will be sacrificed, gone in layman's terms. The socket will be reamed till uninfected bone is reached. There is also a side effect of this cleaning. The facial nerve goes through the top and bottom of the eye socket meaning the right side of my forehead and right side of my face will be numb. No feeling. I wont even feel the right side of my lip. Can you imagine drinking but not feeling the cup on your lip. The mouth may also be affected, possibly the tongue and taste.
He said he will be the one removing the eye.
Along the way he adds the pain in the eye drops. And checks my eyes. Then another doctors check my eyes as well for other things. It was uncomfortable but better to do it.
Later I ask what will happen to the eye. He said it's infected so it cannot be reused, rather it will become someone's lab specimen. The eye may have a muscle flap which will create a flat eye surface depending on what the plastic team chooses.
I will also need to do a peripheral perception test. Basically to see if I have any blackspots in my vision.
I also had a number of calls from the doctor to make appointments. One was to see professor Knuckey to discuss the additional growth in my thyroid, another was to do an ultrasound biopsy, and the other was the peripheral test. I also have to remind myself to see a GP to check my phenytoin levels. Don't really like this drug makes me weak and drowsy.
Wednesday, October 28, 2009
not dead enough
Today I am visited by a voodoo priest. He basically mentioned what I have heard before but this time something seemed to make sense. God gave us a perfect body but the devil corrupts it. And continue to corrupt it at every chance. So in order to heal one must insert some 'ayat' of goodness so the devil can't stay or enter. Thus I am given the usual magic water, black seed oil and stuff. I take it, nothing to loose.
The next day I contemplate having a peaceful day at home. Ring...Ring... this is doctor mumtaz. I'm handling your case. The radiologist noticed a blob around your neck. ! This is not good. You'll need to have your body scanned to see if the cancer have spread. This will affect your treatment.
Shit. How dead can I get. I don't think I will win this.
So I go back to the hospital to get a referral at another clinic to do the scan. I get the usual contrast, isoview or something, feel the glow, and that's it. I hope it doesn't show more spread. If so how many surgeons can I call up in an operation.
The next day I contemplate having a peaceful day at home. Ring...Ring... this is doctor mumtaz. I'm handling your case. The radiologist noticed a blob around your neck. ! This is not good. You'll need to have your body scanned to see if the cancer have spread. This will affect your treatment.
Shit. How dead can I get. I don't think I will win this.
So I go back to the hospital to get a referral at another clinic to do the scan. I get the usual contrast, isoview or something, feel the glow, and that's it. I hope it doesn't show more spread. If so how many surgeons can I call up in an operation.
Monday, October 26, 2009
the titanic still sunk
As expected the 'group' comes in. A big group of doctors lead by the neuro team. Maybe they were the neuro team. He says 'howa ya' (how are you in english). I say ok. "I hear you can go home today". News to me. Your surgery is on the 11 nov. So I don't need to answer the question. You can do the eye test as an outpatient and another MRI when you check again on the 10th.
That's it then. No turning back. If ever I am to beat this thing it will have to be before the 10th, before the MRI.
Later around 11 I say goodbye to the other inmates and was discharged. I have to see the eye doc on Thursday and get check my Phenytoin levels at a GP and check in on the 10th for and MRI. If any miracles were to happen it would have to be before the next MRI. This is the time for voodoo, herbs, diet, anything.
That's it then. No turning back. If ever I am to beat this thing it will have to be before the 10th, before the MRI.
Later around 11 I say goodbye to the other inmates and was discharged. I have to see the eye doc on Thursday and get check my Phenytoin levels at a GP and check in on the 10th for and MRI. If any miracles were to happen it would have to be before the next MRI. This is the time for voodoo, herbs, diet, anything.
Sunday, October 25, 2009
low viscoscity
The day rolls on. I'm thinking I will get the reaper today but no. Maybe tomorrow.
This is the day the peeps have a meeting on my case. Thus I expect some visitors. First to come is the plastic group. They basically say they can do stuff depending on the mess that is there. They mention the hole that is going to be there and the ways they can fix it up. The hole can be covered by muscle and some bone can be attached as well. The bone may come from the rib or my hip. The muscle from my stomach. I may look like a leper after the surgery and I may require additional surgery. I was thinking that if I go blind, what difference will it make, I won't see it and I won't see people seeing it. But unfortunately my wife will.
Next a cancer nurse/coordinator. She can help bridge the gap between doctor and patient so if you don't understand something or need more info then she can help organise something. Kinda a good thing.
Later a social worker visits regarding my benefits. "You from malaysia?" "Yeah" "I'm from Malaysia". Unbelievable. Quite a number of Malaysians here. We had a talk about my circumstance and suggest what is available. I should go on jobseeker benefits but with jobseeking exemption because I am in hospital. The wife can go on parenting allowance. I mention that I need to call the employment department and have an interview. She says ok, let me check with the other girl. She comes back and tells me I have to call the number and have the interview, they can follow up later. I say I have no money to make the call then she made arrangements to call the department. Ring ring. I gets the call and have the interview. As I expect the usual background checks, asset checks employment checks. Then please go to your nearest Department and have another interview. Lucky they made the call otherwise it would have cost a monster on my mobile, $1 per minute almost and it took over 40 minutes.
I notice my pimples are re-emerging... everywhere.
Then a long wait.
I may move to another ward. At 2pm I move to a 4 bed room. It was little awkward as I was alone now I am among strangers. The initial 'hi' was a little hard to fork out but eventually it happened. The ice is broken.
The nurse then came to take me to the eye clinic to get a perception test. When I got there they say next month. ??? I could be blind next month. Oh well never mind. Later the nurse say thursday.
I was thinking the ENT may come in but later Prof K comes in, the neuro dude. He explains what they are going to do. Cut temple to temple, open the old hatch, remove the brain...oops...tumor. The eye doctor will remove the eye. The ENT will scrape the nasal and remove the stuff behind the nose including bone. The area behind the left eye will also be worked on and may impact on the optic nerve. If the surgery does not blind me the radio therapy after it will.
There you can see the nasty cancer. You see the brain tumor, bigger than before and the mess around my nose into the right eye. This is a radical major operation involving multiple groups. It will take the whole day @10 hours. The risks is therefore higher, 20%. Also the usual risk, brain swelling, infection, bleeding and stroke. My dura will also have a hole and my brain covered by skin. This is BAD. My brain will be susceptible to infection and with the amount of wreckage that they are going to create, I fear that infection may be a complication I may not escape.
I have to make a decision by tomorrow. I dunno. I am too tired to think about. It's like being on the Titanic, no matter where you run the ship is gonna sink. So what do you do, jump in the water, look for a floating wooden door (and kick Rose off) or try the lifeboat. But not all the life boats were rescued, 1 or 2 got lost and all the occupants died before rescue. So better I just do it and get on with thinking about something else.
This is the day the peeps have a meeting on my case. Thus I expect some visitors. First to come is the plastic group. They basically say they can do stuff depending on the mess that is there. They mention the hole that is going to be there and the ways they can fix it up. The hole can be covered by muscle and some bone can be attached as well. The bone may come from the rib or my hip. The muscle from my stomach. I may look like a leper after the surgery and I may require additional surgery. I was thinking that if I go blind, what difference will it make, I won't see it and I won't see people seeing it. But unfortunately my wife will.
Next a cancer nurse/coordinator. She can help bridge the gap between doctor and patient so if you don't understand something or need more info then she can help organise something. Kinda a good thing.
Later a social worker visits regarding my benefits. "You from malaysia?" "Yeah" "I'm from Malaysia". Unbelievable. Quite a number of Malaysians here. We had a talk about my circumstance and suggest what is available. I should go on jobseeker benefits but with jobseeking exemption because I am in hospital. The wife can go on parenting allowance. I mention that I need to call the employment department and have an interview. She says ok, let me check with the other girl. She comes back and tells me I have to call the number and have the interview, they can follow up later. I say I have no money to make the call then she made arrangements to call the department. Ring ring. I gets the call and have the interview. As I expect the usual background checks, asset checks employment checks. Then please go to your nearest Department and have another interview. Lucky they made the call otherwise it would have cost a monster on my mobile, $1 per minute almost and it took over 40 minutes.
I notice my pimples are re-emerging... everywhere.
Then a long wait.
I may move to another ward. At 2pm I move to a 4 bed room. It was little awkward as I was alone now I am among strangers. The initial 'hi' was a little hard to fork out but eventually it happened. The ice is broken.
The nurse then came to take me to the eye clinic to get a perception test. When I got there they say next month. ??? I could be blind next month. Oh well never mind. Later the nurse say thursday.
I was thinking the ENT may come in but later Prof K comes in, the neuro dude. He explains what they are going to do. Cut temple to temple, open the old hatch, remove the brain...oops...tumor. The eye doctor will remove the eye. The ENT will scrape the nasal and remove the stuff behind the nose including bone. The area behind the left eye will also be worked on and may impact on the optic nerve. If the surgery does not blind me the radio therapy after it will.
There you can see the nasty cancer. You see the brain tumor, bigger than before and the mess around my nose into the right eye. This is a radical major operation involving multiple groups. It will take the whole day @10 hours. The risks is therefore higher, 20%. Also the usual risk, brain swelling, infection, bleeding and stroke. My dura will also have a hole and my brain covered by skin. This is BAD. My brain will be susceptible to infection and with the amount of wreckage that they are going to create, I fear that infection may be a complication I may not escape.
I have to make a decision by tomorrow. I dunno. I am too tired to think about. It's like being on the Titanic, no matter where you run the ship is gonna sink. So what do you do, jump in the water, look for a floating wooden door (and kick Rose off) or try the lifeboat. But not all the life boats were rescued, 1 or 2 got lost and all the occupants died before rescue. So better I just do it and get on with thinking about something else.
Friday, October 23, 2009
creep
I'm very sleepy this morning. Don't know why.
I am greeted by a blood reaper. I knew it was time. Never mind. I just let it happen. It seemed to hurt less.
I also a had feeling the neuro team would come in. Sure enough. A group of three. I had some questions but only managed to fire 1, "what's the surgical procedure?". Cut temple to temple, lift out the old hatch, scoop out the tumor or what can be scooped. The ENT will cut some more into the orbit and probably to the bridge of the nose, removing the bone and the right eye. So I will have no bone there. I will never soccer a ball again with my head. The left eye may go as they fudge around the left side. Will my smelling nerves be detached?
I feel more giddy now, maybe it's the stay maybe it's the tumor.
So now I am pondering. The future, the options. I would really like to know whats going to happen around my nose. Can I go on alternative medicine? What I would really like is to preserve my sight on the left eye and then try alternative, chemo and radio. Do I have these options?
Some time during the day the nurse comes in and we chat a little. He asks what I would like to do before the operation. I think, good question. I have thought about this before but not come to an answer. Drive, I've driven all my life, see the blue mountains the beach. So I think, finally I cam to an answer, movies. So tomorrow I will take day leave and see the surrogates. I will miss movies.
Later during the day my wife comes in some friends and relatives. It's good to have visitors they change your focus for a while.
I ugly thing that happened was that while I was talking my father was staring at me like I was a madman. I hate people looking at me like this, I felt like giving him a slap.
I am greeted by a blood reaper. I knew it was time. Never mind. I just let it happen. It seemed to hurt less.
I also a had feeling the neuro team would come in. Sure enough. A group of three. I had some questions but only managed to fire 1, "what's the surgical procedure?". Cut temple to temple, lift out the old hatch, scoop out the tumor or what can be scooped. The ENT will cut some more into the orbit and probably to the bridge of the nose, removing the bone and the right eye. So I will have no bone there. I will never soccer a ball again with my head. The left eye may go as they fudge around the left side. Will my smelling nerves be detached?
I feel more giddy now, maybe it's the stay maybe it's the tumor.
So now I am pondering. The future, the options. I would really like to know whats going to happen around my nose. Can I go on alternative medicine? What I would really like is to preserve my sight on the left eye and then try alternative, chemo and radio. Do I have these options?
Some time during the day the nurse comes in and we chat a little. He asks what I would like to do before the operation. I think, good question. I have thought about this before but not come to an answer. Drive, I've driven all my life, see the blue mountains the beach. So I think, finally I cam to an answer, movies. So tomorrow I will take day leave and see the surrogates. I will miss movies.
Later during the day my wife comes in some friends and relatives. It's good to have visitors they change your focus for a while.
I ugly thing that happened was that while I was talking my father was staring at me like I was a madman. I hate people looking at me like this, I felt like giving him a slap.
Thursday, October 22, 2009
a week goes by fast
it's friday.
The nurse comes in, it's like a different nurse a day, and introduced himself. OK. He mentions that I may have an eye test. OK. Nothing interesting.
Next the Neuro team comes in, say how you, well. ??? well what? Operate? ???
Is there some parallax error here. I don't know what's up and he's talking about acceptance. I was dumb founded. He then said they'll come in later and ask again. Think about it, talk to your wife. Then gone.
The wife came in, early. Spent the day. Talk about plans and contingencies etc, the day to day and future. She mentions going to the movies. I then wonder if I can get half price if I were blind seeing as I will not see the movie but hear the sound. :)
My loss of smell also concerns me. I have an after smell and taste of citrus but I cannot smell anything else. The taste and smell is constant in my mouth and nose. I don't know what it is. All I know is that I cannot smell. My stomach is constantly grumbling, maybe due to the steroids, so I am passing gas constantly. I worry that it smells like a toilet in this room and not know it. If I fart in my bed will the nurse smell it when they check me? :(
The nurse comes in, it's like a different nurse a day, and introduced himself. OK. He mentions that I may have an eye test. OK. Nothing interesting.
Next the Neuro team comes in, say how you, well. ??? well what? Operate? ???
Is there some parallax error here. I don't know what's up and he's talking about acceptance. I was dumb founded. He then said they'll come in later and ask again. Think about it, talk to your wife. Then gone.
The wife came in, early. Spent the day. Talk about plans and contingencies etc, the day to day and future. She mentions going to the movies. I then wonder if I can get half price if I were blind seeing as I will not see the movie but hear the sound. :)
My loss of smell also concerns me. I have an after smell and taste of citrus but I cannot smell anything else. The taste and smell is constant in my mouth and nose. I don't know what it is. All I know is that I cannot smell. My stomach is constantly grumbling, maybe due to the steroids, so I am passing gas constantly. I worry that it smells like a toilet in this room and not know it. If I fart in my bed will the nurse smell it when they check me? :(
Wednesday, October 21, 2009
low...so low it's cold
thursday (already)
No blood reaper. That's good.
Neuro comes in, hello then say how big our party is. He mentions that they are working on it and I will have to decide whether to operate when it is time.
A social worker also came in to see what they could do. Mentioned a social 'club' ie some social activity at the hospital like play games, exercise, etc. She also mentions social security help, I said no but later would like to know if there was anything that can help. Hope she can send someone who knows. I am penniless and could do with some handouts.
Later she came and mentioned the main,,,
No blood reaper. That's good.
Neuro comes in, hello then say how big our party is. He mentions that they are working on it and I will have to decide whether to operate when it is time.
A social worker also came in to see what they could do. Mentioned a social 'club' ie some social activity at the hospital like play games, exercise, etc. She also mentions social security help, I said no but later would like to know if there was anything that can help. Hope she can send someone who knows. I am penniless and could do with some handouts.
Later she came and mentioned the main,,,
kick in the guts
Today, wednesday 21 oct 2009 at SCGH. This is what the nurse asks when they check you, just in case you're dead and think you're in heaven....hell?
So what greets me this morning? The blood reaper! Mother! I was just bled yesterday. It's like nurturing a pet vampire. Let's see what happens tomorrow.
Today the doc comes in and say hello, how are you. You're gonna see the ENT today. Good. Then left. That's it.
So I wait...and wait.
A wheelchair comes in and I must be going somewhere. "CT scan." Dang, it wasn't what I was waiting for but CT is fast. So I go. I ask at the counter, contrast? One minute...no. Good, no needles.
Please lay here, you have a cannula? No, ok we'll put one. ??? Shit man I'm gonna get a needle. At least she poked the elbow, above the other needle mark where the girl took blood out yesterday. I better get used to it. Then it was the contrast, intrivis or something, and it was over, 10 minutes or so.
Later in the afternoon the doctor comes and indicate that it is time. Come with me. So I go, in a wheel chair. Why not, I was getting lazy, don't want to faint.
This is it, the neuro I can see what they can do but what will happen after surgery will depend on what the ENT will do. The ENT holds the key. The doc was out for lunch and I have to wait. The wait was bad. Finally "come in". He asks a few simple questions. The scope, down to the throat.
Then the bad news, the brain tumor is pretty big and connected, the nasal is a bigger mess. It's behind your nose, your right is obvious and starting to intrude into the left. The right eye orbit is infected and there is also some movement towards the left.
If ...IF we operate then you will lose your right eye to scoop the cancer (because it has infected the muscle), the inner nasal is going to be bombed and what is now a small hole will be huge. The left eye may go due to chemo or radio. Then the plastic must find some meat to shove into the mess. Then there's infection due to the amount of the construction work. Basically to remove it totally they will need to remove the front of my face. The operating theatre is going to be a party, neuro, ENT, eye and plastic surgeons, wonder if there will be chips, girls and nachos. That's if they operate. And the operation is just a trimming measure! Not a cure. So wednesday was off.
Fuck (for short of a better word).
Jahanam! (a better word)
During the night a plastic surgeon touched based. Basically just an intro and she said they can't do/say anything until they know what's going to happen. I say I don't know what to ask until I know what they are going to do. So I wait, again.
So what greets me this morning? The blood reaper! Mother! I was just bled yesterday. It's like nurturing a pet vampire. Let's see what happens tomorrow.
Today the doc comes in and say hello, how are you. You're gonna see the ENT today. Good. Then left. That's it.
So I wait...and wait.
A wheelchair comes in and I must be going somewhere. "CT scan." Dang, it wasn't what I was waiting for but CT is fast. So I go. I ask at the counter, contrast? One minute...no. Good, no needles.
Please lay here, you have a cannula? No, ok we'll put one. ??? Shit man I'm gonna get a needle. At least she poked the elbow, above the other needle mark where the girl took blood out yesterday. I better get used to it. Then it was the contrast, intrivis or something, and it was over, 10 minutes or so.
Later in the afternoon the doctor comes and indicate that it is time. Come with me. So I go, in a wheel chair. Why not, I was getting lazy, don't want to faint.
This is it, the neuro I can see what they can do but what will happen after surgery will depend on what the ENT will do. The ENT holds the key. The doc was out for lunch and I have to wait. The wait was bad. Finally "come in". He asks a few simple questions. The scope, down to the throat.
Then the bad news, the brain tumor is pretty big and connected, the nasal is a bigger mess. It's behind your nose, your right is obvious and starting to intrude into the left. The right eye orbit is infected and there is also some movement towards the left.
If ...IF we operate then you will lose your right eye to scoop the cancer (because it has infected the muscle), the inner nasal is going to be bombed and what is now a small hole will be huge. The left eye may go due to chemo or radio. Then the plastic must find some meat to shove into the mess. Then there's infection due to the amount of the construction work. Basically to remove it totally they will need to remove the front of my face. The operating theatre is going to be a party, neuro, ENT, eye and plastic surgeons, wonder if there will be chips, girls and nachos. That's if they operate. And the operation is just a trimming measure! Not a cure. So wednesday was off.
Fuck (for short of a better word).
Jahanam! (a better word)
During the night a plastic surgeon touched based. Basically just an intro and she said they can't do/say anything until they know what's going to happen. I say I don't know what to ask until I know what they are going to do. So I wait, again.
Tuesday, October 20, 2009
waiting
Man HDU checks your blood pressure, temp and response every 2 hours, 24 hours! Sleeping is not allowed, well how can you sleep. Next morning, tuesday, the blood reaper was waiting.
I come to take your blood. OK. Take it. But this girl took the easy path, the exposed right hand vein. Oh well, what to do.
Afternoon, I move, to the normal ward. Relieved. And a surprise, a single room. It think it's because I have allergies, prawns and crabs.
Oh well some privacy and peace.
I come to take your blood. OK. Take it. But this girl took the easy path, the exposed right hand vein. Oh well, what to do.
Afternoon, I move, to the normal ward. Relieved. And a surprise, a single room. It think it's because I have allergies, prawns and crabs.
Oh well some privacy and peace.
a new hope
Oh its a van, thought I was gonna get an ambulance.
Got everything? Yes. The locked drugs, yes. Had to take it, I paid 50 bucks for it. Also got more. I was afraid it would get lost so I put it in my bag but they remembered and wanted it back so they can lock it up.
When I got to SCGH I thought I would get a ward but no, HDU (high dependency unit). What's that? It's one drop below ICU. Maybe it should be LICU (less intensive care unit).
I didn't like this new home, it was like living in a lab, machines, people, environment. It feels like having a hospital bed in the middle of someones living room and you are the focal point. The nurse said when a bed is free you will move. Cool, soon I hope.
Got everything? Yes. The locked drugs, yes. Had to take it, I paid 50 bucks for it. Also got more. I was afraid it would get lost so I put it in my bag but they remembered and wanted it back so they can lock it up.
When I got to SCGH I thought I would get a ward but no, HDU (high dependency unit). What's that? It's one drop below ICU. Maybe it should be LICU (less intensive care unit).
I didn't like this new home, it was like living in a lab, machines, people, environment. It feels like having a hospital bed in the middle of someones living room and you are the focal point. The nurse said when a bed is free you will move. Cool, soon I hope.
in transit
So it's Monday.
Another day. First up, the blood guy is back! Can't believe it, he already took blood on friday and first up me. What the hey, take it. I'm not gonna look this time, should hurt less. I hear I'm going to move today to SCGH, so I'm not going to see u again :)
bye
So I wait, and wait, and wait...then...ok transport ready, you, go.
Cool I go to a newer(?) hospital?
Hope I get my own room again again.
Another day. First up, the blood guy is back! Can't believe it, he already took blood on friday and first up me. What the hey, take it. I'm not gonna look this time, should hurt less. I hear I'm going to move today to SCGH, so I'm not going to see u again :)
bye
So I wait, and wait, and wait...then...ok transport ready, you, go.
Cool I go to a newer(?) hospital?
Hope I get my own room again again.
Sunday, October 18, 2009
another day
It's Sunday, another day. I was bored but I had the laptop. Did some work.
Then I decided to take another look for B17 (aka laetrile or amygdalin). I went out to the city after lunch to clear the boredom and look for this if there was a health shop or chemist on the way. Nothing.
Web surfing tells me that it may be illegal in this country. Unbelievable. Of all the places. The plum tree at home is still months away from fruits. If it can make my cancer go...where the hell am I gonna get this thing from.
Then I decided to take another look for B17 (aka laetrile or amygdalin). I went out to the city after lunch to clear the boredom and look for this if there was a health shop or chemist on the way. Nothing.
Web surfing tells me that it may be illegal in this country. Unbelievable. Of all the places. The plum tree at home is still months away from fruits. If it can make my cancer go...where the hell am I gonna get this thing from.
limited freedom
Since this was the weekend I was allowed to go home for the day and come back at night.
It was a hot day but I was free. It felt good. Hospital was making me very lazy (lazier actually, I am already lazy) and weak. I go home meet the parents, rest and feel away from all the problems (till 6pm anyways when I have to take the bus back to the hospital).
It was a hot day but I was free. It felt good. Hospital was making me very lazy (lazier actually, I am already lazy) and weak. I go home meet the parents, rest and feel away from all the problems (till 6pm anyways when I have to take the bus back to the hospital).
back to square one
When I checked in the other day Dr G also made a visit.
He had the scans and gave it to me.
I looked at it, it was bad. I couldn't believe the brain tumour had regrown since May. Large and fast. The first tumour was Danny DeVito. This was his bigger brother Arnold DeSchwarzenegger. I hope he's not terminating anymore and just governing. Then I can vote him out of my office.
The cancer around my nasal though was all over the place. It was a mess.
The brain tumour was near the frontal lobe so I knew that the neuro will be tempted to scoop it out. This was later confirmed when the Neuro Registrar (what the hell does that mean) came and suggest that surgery was the most likely scenario followed by radio therapy. If I didn't do anything I get a few months to live, with radio maybe a few years, but both maybe supression for quite a while. Great choice I had. She didn't know what the ENT would do but my guess is that with me out cold (and hopefully alive) they may kick me in the guts as well. We will see next week when I have to move to another hospital that will do the surgery and where they are based.
Can't wait.
I am now back to where I was last year but in another country.
He had the scans and gave it to me.
I looked at it, it was bad. I couldn't believe the brain tumour had regrown since May. Large and fast. The first tumour was Danny DeVito. This was his bigger brother Arnold DeSchwarzenegger. I hope he's not terminating anymore and just governing. Then I can vote him out of my office.
The cancer around my nasal though was all over the place. It was a mess.
The brain tumour was near the frontal lobe so I knew that the neuro will be tempted to scoop it out. This was later confirmed when the Neuro Registrar (what the hell does that mean) came and suggest that surgery was the most likely scenario followed by radio therapy. If I didn't do anything I get a few months to live, with radio maybe a few years, but both maybe supression for quite a while. Great choice I had. She didn't know what the ENT would do but my guess is that with me out cold (and hopefully alive) they may kick me in the guts as well. We will see next week when I have to move to another hospital that will do the surgery and where they are based.
Can't wait.
I am now back to where I was last year but in another country.
no escape
I knew it was too good. I was taking a shower and a knock was at the door. Yeah? I am here to take your blood.
10 minutes.
Then he came back. I say didn't I say come back in a year, 6 months?
He wasn't taking any of that. Nope it's torture time. I show him the big open vein on my right hand. So he says, "that would not challenge my abilities, gimme your left". Bastard. Fortunately he did have abilities and the blood flowed. There was a bulge there growing. I would have thought that if you take blood out, it would not bulge. Funny. Then he left. Since he didn't work on the weekends I said I was safe for a few days, he replied there are replacements, doh!
10 minutes.
Then he came back. I say didn't I say come back in a year, 6 months?
He wasn't taking any of that. Nope it's torture time. I show him the big open vein on my right hand. So he says, "that would not challenge my abilities, gimme your left". Bastard. Fortunately he did have abilities and the blood flowed. There was a bulge there growing. I would have thought that if you take blood out, it would not bulge. Funny. Then he left. Since he didn't work on the weekends I said I was safe for a few days, he replied there are replacements, doh!
a day in oz
So this is a day in an oz hospital.
House keeping comes in the morning. No towels, brush, soap, clothes? My wife is bringing it. So she gets the prison uniform, toothbrush, shaving cream, mouth wash, towels, razor. Nice, but it's still a hospital, a place of death and torture.
Breakfast also comes in, cereal or porridge. Cereal please. Another lady comes in and ask for my choice for the day, halal blah or halal blah for lunch, and dinner? Nice, halal western food. But you loose your appetite in hospital.
So far I have escaped the needles except for the pin pricks for checking the blood sugar levels. I still worry thought.
House keeping comes in the morning. No towels, brush, soap, clothes? My wife is bringing it. So she gets the prison uniform, toothbrush, shaving cream, mouth wash, towels, razor. Nice, but it's still a hospital, a place of death and torture.
Breakfast also comes in, cereal or porridge. Cereal please. Another lady comes in and ask for my choice for the day, halal blah or halal blah for lunch, and dinner? Nice, halal western food. But you loose your appetite in hospital.
So far I have escaped the needles except for the pin pricks for checking the blood sugar levels. I still worry thought.
day one in hospital
So the next day I take the bus to the hospital to the city. My wife was not too confident of driving so the bus was the way to go.
I get there, I register, then wait for a bed...5 hours. The nurse say you can go and come back around 2-3pm. Ok so I go to the city looking for food, halal food. Once I get there after walking so long, the hospital calls saying a doctor wanted to see me. Unbelievable, this always happens when I leave the hospital.
So I buy something from a halal cafe and go back.
The nurse pages the doc. The docs comes and in passing said that she was from Malaysia. How about that, we export something, but they never return.
I see a neuro assistant and radio oncology assistant. They do some simple tests and that was it.
Later my bed was ready. I go. It was a single room. Cool a room of my own (just lucky). I was expecting the 'prison garb' but this did not happen. I was also expecting the piping but this also did not happen. Cool and relieved.
We were chilling out when a women entered asking what I would like to eat. We have...then the halal word popped out. She says yeah we can get you that for tomorrow. There's none tonight. So I ask for vegetarian.
I get there, I register, then wait for a bed...5 hours. The nurse say you can go and come back around 2-3pm. Ok so I go to the city looking for food, halal food. Once I get there after walking so long, the hospital calls saying a doctor wanted to see me. Unbelievable, this always happens when I leave the hospital.
So I buy something from a halal cafe and go back.
The nurse pages the doc. The docs comes and in passing said that she was from Malaysia. How about that, we export something, but they never return.
I see a neuro assistant and radio oncology assistant. They do some simple tests and that was it.
Later my bed was ready. I go. It was a single room. Cool a room of my own (just lucky). I was expecting the 'prison garb' but this did not happen. I was also expecting the piping but this also did not happen. Cool and relieved.
We were chilling out when a women entered asking what I would like to eat. We have...then the halal word popped out. She says yeah we can get you that for tomorrow. There's none tonight. So I ask for vegetarian.
scans are ready
Tuesday, no calls.
Wednesday...nothing...ring. It was the doc. He said how are you, how's your headache, your brain is swelling. I knew it was not good from that alone. He says I want you to admit yourself to hospital...now...via emergency. Sounds bad. Lucky I didn't have to visit him, else straight to the ward.
It was night and I didn't feel that anything was going to happen at the hospital and having spent time in hospital, I would rather spend some more time with my wife and daughter.
I say, tomorrow? He sounded disappointed and added you better get some steroids. Yeah my favourite.
I go around looking for a chemist and luckily find an opened one. I didn't have a prescription so I had to give the chemist the doc's number. Luckily all goes well (for once) and I get my 'medicine'. Steroids $18, antacid $35. Bodybuilders pay hundreds for steroids. I get this for $18.
By the way, you cannot drive anymore.
Wednesday...nothing...ring. It was the doc. He said how are you, how's your headache, your brain is swelling. I knew it was not good from that alone. He says I want you to admit yourself to hospital...now...via emergency. Sounds bad. Lucky I didn't have to visit him, else straight to the ward.
It was night and I didn't feel that anything was going to happen at the hospital and having spent time in hospital, I would rather spend some more time with my wife and daughter.
I say, tomorrow? He sounded disappointed and added you better get some steroids. Yeah my favourite.
I go around looking for a chemist and luckily find an opened one. I didn't have a prescription so I had to give the chemist the doc's number. Luckily all goes well (for once) and I get my 'medicine'. Steroids $18, antacid $35. Bodybuilders pay hundreds for steroids. I get this for $18.
By the way, you cannot drive anymore.
my head glows
A day later the doc's office calls to say that my scan is set for Saturday.
Cool, so I go. "This is a private clinic, all charges have to be settled." This means I have to pay something. The MRI scans in Malaysia are $1200, so it ain't gonna be cheap.
I was early, for once, and they were late but I waited patiently. Then it was my turn and the piping was necessary. I hate IV piping. It didn't hurt...much ... but I still hate it. Pulling nasal or facial hair hurts more.
I had to change to the 'prison garb' and I forgot to wear underwear, hope nobody noticed. I also forgot to remove my ring! Lucky it didn't get suck into the MRI machine. It's magnetic after all.
I got earphones to listen to music. The noise from the MRI was so loud I could not hear anything anyway. Wonder what the speakers are made off, magnet safe?
After 30 minutes or so I was free.
$630+, I knew it would cost me. The gadolinium alone was $68. Lucky I didn't get the one HKL used that would have made me glow. I am penniless so on to the credit card it goes.
Your scans will be ready by Tuesday.
Cool, so I go. "This is a private clinic, all charges have to be settled." This means I have to pay something. The MRI scans in Malaysia are $1200, so it ain't gonna be cheap.
I was early, for once, and they were late but I waited patiently. Then it was my turn and the piping was necessary. I hate IV piping. It didn't hurt...much ... but I still hate it. Pulling nasal or facial hair hurts more.
I had to change to the 'prison garb' and I forgot to wear underwear, hope nobody noticed. I also forgot to remove my ring! Lucky it didn't get suck into the MRI machine. It's magnetic after all.
I got earphones to listen to music. The noise from the MRI was so loud I could not hear anything anyway. Wonder what the speakers are made off, magnet safe?
After 30 minutes or so I was free.
$630+, I knew it would cost me. The gadolinium alone was $68. Lucky I didn't get the one HKL used that would have made me glow. I am penniless so on to the credit card it goes.
Your scans will be ready by Tuesday.
first contact
So I see the doctor. Happens to originate from Ipoh, funny. (Even the chemist near my house was from Malaysia.)
Anyways, we have the small talk and look at the 'holiday photos' (scans). Blah blah blah then he suggests that I go for an MRI scan. I was eager for this as it had been a while since the last one and I was beginning to get minor headaches.
With contrast? Yep...darn I hate contrast.
Done...$139.
Anyways, we have the small talk and look at the 'holiday photos' (scans). Blah blah blah then he suggests that I go for an MRI scan. I was eager for this as it had been a while since the last one and I was beginning to get minor headaches.
With contrast? Yep...darn I hate contrast.
Done...$139.
comprehensive cancer center
Well it sounded good. After parking and looking for the place, Dr G didn't work here anymore! I say that any cancer doctor will do and the answer was that a doc was going for 1 week leave and the other was taking the slack and it will be a long wait.
Unbelievable. The receptionist tracked Dr G down like a dog and faxed my referral. Dr G's office calls and say okay, 6 Oct...and...$200. Ok-lah a few days from now.
What to do.
Unbelievable. The receptionist tracked Dr G down like a dog and faxed my referral. Dr G's office calls and say okay, 6 Oct...and...$200. Ok-lah a few days from now.
What to do.
referral
A few days later armed with my new ticket I book an appointment with a general practitioner (GP).
My sister says the egyptian doctor was good but he was busy so I was left with Dr Pang.
When I met him I knew this was going to be a crappy visit. Sure was, so to cut to the point I just ask him to get a referral to another doctor. Then I was out. I don't want to see this guy anymore, a very bland visit.
My sister says the egyptian doctor was good but he was busy so I was left with Dr Pang.
When I met him I knew this was going to be a crappy visit. Sure was, so to cut to the point I just ask him to get a referral to another doctor. Then I was out. I don't want to see this guy anymore, a very bland visit.
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